Weggies & Work

[Jack]

Yes, I take your point and I'm sure you are right and there is still plenty of discrimination against people with medical needs. But things change and who knows what the future will bring your way.

[charitygolfdays]

Ju has just had her third session of chemo; today (the day after) has been a bit tough for her. Feeling, but not being sick, wanting to eat but feeling sick, eating a little but feeling low. etc etc.

As far as work is concerned, Ju is now off work for at least the next six months. Ju works as a practice nurse in a doctor's surgery so weg's doctors don't want her anywhere near people who are ill.

It's a bit tough as Ju has hardly ever had a day off sick since leaving school! I have been threatened with divorce if i bring home a jigsaw puzzle for her to do!

Jase

[Hopeful]

Hi Hopeful, sorry you lost your Dad. When you feel like it,I like to hear your story on how it (WG) began. Do you see a Wegeners Specialist? I too noticed Hopeful that I feel better when I rest. My sinuses are better when I nap. Maybe you could cut back half time, talk to your boss about it. Are you having joint pain?

Hi elephant. My wegs story begins in June 2008. Caught a resistant form of pneumonia from some idiot on the bus. Thought antibiotics had knocked it out but was still unable to exercise without becoming breathless and my sinuses were kicking up worse than usual. (I have since learned that wegs can lie dormant for years, kicking up occasionally in the sinuses acting like an allergy or just the sniffles.) Anyway my GP treated me for sinus infection which never went away after many rounds of antibiotics. I then noticed my ear was full of fluid and couldn't hear well and went to an ENT. He put in a grommet and the hearing improved. By September I still had a little cough and wasn't able to function well in my new job. GP sent me for a chest xray and said I had pneumonia again/still. That finally got cleared up, then in December I noticed I had trouble walking/standing. Couldn't walk as much as before or stand as long without becoming tired. I had started another new job in November but by mid January I couldn't even get myself dressed, I was in such pain I was in tears most of the time. Still managed to get through work though and would go home and collapse in bed. All the time my GP was telling me it was arthritis. He refered me to a rheumatologist who couldn't see me for another 6 months. I kept pestering the nurses at the rheumys and they suggested a locum rheumy. The locum could see me right away and after 5 minutes she said it looks like wegeners. Did all the tests incl. kidney biopsy to confirm. Doctor (registrar - like resident or intern) at the renal clinic did the biopsy on April 1 2009, cyclophosphamide begun April 23 - 6 pulses. Put on Azathioprine for about 6 months, but it seemed to stop working (I may have been flaring). Started seeing a new (3rd) GP who recommended an immunologist. The immunologist believes I was undertreated with the cyclo and has switched me to Methotrexate. Throughout the whole thing I have had joint pain. In one foot it feels like the joint actually dislocates and I have to put light pressure on it to pop it back in. Scans just show arthritic type blood pooling. The Registrar says to take ibuprofen. I prefer paracetamol with 8 mg codeine (Panadeine Extra for the Aussies out there). But I only take one about 3 times a week. Cutting back on work is not an option. Any other suggestions for the joint pain? Sorry this is so long. As you know it is a long road from symptoms to remission and I hope to get there soon.

[Nancy]

Hello everybody -
Work..... Well, I have had my Dx of WEGS for over 14 yrs. Initially I took 2 months off upon initial Dx due to chemo, fatigue, pred and just tired of coughing.. I was a Registered nurse at that time - in school for my Master's and working Home health as a director with lots of call time requirements and then on the weekends - working in ICU at the local Level 1 trauma hospital. Since then I have not missed a step - finished Master's, finished raising 2 girls, married/divored, etc...until April of this year. The WEGS changed from lung focused after 14 yrs to systemic in Nov 2009 and then settled in my sinuses . I was completely off work for about 1.5 months and am slowly working back into more of a FT/moderately heavy part-time position as a Nurse Practitioner in a correctional setting (Adults and Teenagers). I am trying to watch exposure - but as a healthcare professional - there is only so much you can do.... I agree with Hopeful above - there is not an option to "stop" work for me... the backlog for disability in the State of Kansas is approx 3 years. Enough people already do not understand WEGs - it is hard to describe the issues that we all go through and how that might require disability status... After tx with RTX - more energy - and feeling free of most symptoms/issues - 75% of the time - except for burning nares... boy, it reminds me of going into a highly chlorinated pool and getting a snoutful.... When I am tired, i try to rest. If really bad, the jobs that I have flex my days - I am lucky most people do not like working with the "criminal types"..
I consider myself pretty lucky overall. It is amazing how the WEGs can change your life.... good and bad....

[Sangye]

Hopeful, I'd bet my money that you never had pneumonia in the beginning...sounds just like Wegs affecting the lungs. I've been diagnosed with "atypical pneumonia" several times, and it never responded to antibiotics, either. It turned out to be Wegs every time. Lung involvement typically progresses slowly, so it could take months to become obvious.

I've had the joint pain also. For me, it's an indicator that the disease is not fully under control. After finishing 7-8 months of ctx and pred initially, the joint pain continued for the next 2.5 years, even though I was on Cellcept for most of that time. The pain wasn't as severe as pre-diagnosis, but it was pretty awful. Two rounds of rtx have finally gotten the Wegs under control for the first time in 4 years, and lo and behold--I don't have the joint pain. It's possible that the mtx isn't strong enough for you. How experienced is your immunologist in treating Wegs?

[DEE]

I've had the joint pain also. For me, it's an indicator that the disease is not fully under control. After finishing 7-8 months of ctx and pred initially, the joint pain continued for the next 2.5 years, even though I was on Cellcept for most of that time. The pain wasn't as severe ..........

thanks Sangye the above has answered a question i have been meaning to ask I still have quiet abit of joint pain especially ankles and wrist and shoulders infact all joints and ithought it was just me thst after all the treatment ive had it should have been alot better by now

[jola57]

I am lucky to work for myself with a wonderful business partner. After initial diagnosis 4 years ago I took off just a couple of weeks and a day here and there when needed. I work full time and some nights, for strata council meetings. As a realtor and property manager I deal with people every day but have been lucky to have only a couple of light sniffles. There were days that I was so tired that I just closed the door to my office and lay my head on the desk and rested. Thankfully I am feeling great and am able to do many things I love like travel, even if I have to use a cane. I will continue to work full time for as long as I can. Actually I workd 2 full time jobs, I am also my husband's office manager and do medical billings. I consider myself lucky that the meds did not mess me up and that I tolerated them so well. I am on 4mg of pred, its been over a month now but I think that I will stick with it for another month then go down by 1/2's. I will be on mtx 10mg for the next, second, year. I am sure that not having the pressure of having to be at work or worry about finances or disability has contributed to my overall wellbeing. As a society we have a long way to go in order to put people above all else such as productivity or money. governments must put more attention on helping ill or disabled persons continue in their job by financing the sick off days for the employer who in turn would not feel the pressure to fire the employee. Well that is my world thru rose colored glasses

[pberggren1]

I'm glad you were and are still able to work with Wegs Jolanta. Knowing that other Weggies have it either worse or better than me helps put things in perspective for me. Years ago I thought of getting into real estate. At one time I even wanted to be a doctor or architect.

[Jack]

Hopeful - do not take Ibuprofen, it does not mix well with the other drugs we take. I am now using Tramadol and it seems to help, but I use the slow release type and started on a low dose. First time I tried it I went straight in on a high dose and had to stop because I did not tolerate it at all well.

I agree with the others that the joint pain can be an indicator of Wegs activity, but a lot of us seem to have foot pain in spite of the disease apparently being well controlled. I don't think this aspect has been investigated or documented yet. I've had every test in the book without finding what is causing it.

[elephant]

Hopeful, like many of us stated ...I too believe that joint pain is a indicator that your Wegs is not controlled. I would seek a Wegeners doctor soon. You deserve the best care and once you find a Rheumatologist that seer's many wegeners patients you will notice the difference. Sorry you have to work through all this. Keep us updated.